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    Frustrated

    Hi this is a major rant. From reading lots of posts I have learned that care and support differs greatly.

    Mine has been awful. we have no mnd nurse in our area so we use the palliative care team which consists of an OT and a physio. They both constantly palm me off. For example the doctor asked the physio to sort a brace out for my shoulder. She is now saying get hospice physio to do it. Same as ot. Ask her re podiatrist today and told go to district nurses. I'm so fed up of going via numerous depts. I want to complain but feel that the bare care I have will be damaged.

    Its really getting me down.
    Last edited by shelly21; 4 January 2022, 09:56.
    Diagnosed May 2021 bulbar onset als.

    #2
    shelly21 oh dear, what a nuisance xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    Comment


      #3
      Lynne K I hate it. I sort everything myself. I've never been offered physio. I've purchased so many things myself because I get so fed up of not knowing who to contact or what I'm entitled to. x
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        Oh I have a list of being palmed off. It seriously does my head in. GP surgery everyone. I was finally told we had fallen through the cracks but I can only imagine it was an earthquake not a crack. I seemed to get more help when I, not my husband, claimed stress and lack of sleep and needing support. Stephen has mnd and awaiting a dementia diagnosis so it's a lot to deal with and of course being out of the country means we are late getting people in place. But I've been really been in a bad place for not coping and suddenly a community nurse, dietician, GP surgery have been supportive. Cant say a lot is happening but at least they are saying they're there. A physio called but said she really didn't know what to do/suggest. Stephen has shoulder pain but I'm using aspirin. I agree everything is better in some places than others and even then covid gets thrown around like an excuse for everything.
        it's a mess out there.
        😘
        when i can think of something profound i will update this.

        Comment


          #5
          I guess you need to speak to your GP then complain to your local CCG (clinical commissioning group). They are supposed to be responsible for providing effective, seamless local services. Your local Citizens Advice could support you (accessible by phone or chat messages).

          You should not put up with any worse service after complaining. That would be discrimination. To be honest though it doesn’t sound as if it could get much worse.
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

          Comment


            #6
            shelly21 sounds like a nightmare.

            The GP asked the physio to sort out a brace....she/he says it's the job of the hospice physio....therefore it's not for you to sort this...that physio needs to tell the GP that and then refer to the hospice physio.....which sounds dubious to me.
            Same thing re podiatrist....it's not for you to chase DNs...

            The problem is when we are use to being very independent our natural inkling is to 'sort it' whatever 'it' is lol

            Professionals need to do their job....don't do it for them...

            Good luck👍🏻
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

            Comment


              #7
              Shelly, I don't blame you for being frustrated or outraged by your lack of joined up care, or just lack of care...

              Idk if you want to read the NICE recommendations on "Organisation Of Care" to know what should happen/what to ask (fight) for, but here they are: (an excerpt from the full MND document)

              1.5 Organisation of care
              1.5.1Provide coordinated care for people with MND, using a clinic‑based, specialist MND multidisciplinary team approach. The clinic may be community or hospital based. [2016]
              1.5.2The multidisciplinary team should:
              • include healthcare professionals and social care practitioners with expertise in MND, and staff who see people in their home
              • ensure effective communication and coordination between all healthcare professionals and social care practitioners involved in the person's care and their family members and/or carers (as appropriate)
              • carry out regular, coordinated assessments at the multidisciplinary team clinic (usually every 2–3 months) to assess people's symptoms and needs
              • provide coordinated care for people who cannot attend the clinic, according to the person's needs. [2016]
              1.5.3The multidisciplinary team should assess, manage and review the following areas, including the person's response to treatment:
              • Weight, diet, nutritional intake and fluid intake, feeding and swallowing (see section 1.10).
              • Muscle problems, such as weakness, stiffness and cramps (see recommendations 1.8.1–1.8.9 in section 1.8).
              • Physical function, including mobility and activities of daily living (see section 1.9).
              • Saliva problems, such as drooling of saliva (sialorrhoea) and thick, tenacious saliva (see recommendations 1.8.10–1.8.15 in section 1.8).
              • Speech and communication (see section 1.11).
              • Cough effectiveness (see section 1.13).
              • Respiratory function, respiratory symptoms and non‑invasive ventilation (see sections 1.12 and 1.14).
              • Pain and other symptoms, such as constipation.
              • Cognition and behaviour (see section 1.3).
              • Psychological support needs (see recommendations 1.6.1–1.6.4 in section 1.6).
              • Social care needs (see recommendations 1.6.5–1.6.6 in section 1.6).
              • End of life care needs (see section 1.7).
              • Information and support needs for the person and their family members and/or carers (as appropriate) (see section 1.2). [2016]
              1.5.4The core multidisciplinary team should consist of healthcare professionals and other professionals with expertise in MND, and should include the following:
              • Neurologist.
              • Specialist nurse.
              • Dietitian.
              • Physiotherapist.
              • Occupational therapist.
              • Respiratory physiologist or a healthcare professional who can assess respiratory function.
              • Speech and language therapist.
              • A healthcare professional with expertise in palliative care (MND palliative care expertise may be provided by the neurologist or nurse in the multidisciplinary team, or by a specialist palliative care professional). [2016]
              1.5.5The multidisciplinary team should have established relationships with, and prompt access to, the following:
              • Clinical psychology and neuropsychology.
              • Social care.
              • Counselling.
              • Respiratory ventilation services.
              • Specialist palliative care
              • Gastroenterology.
              • Orthotics.
              • Wheelchair services.
              • Assistive technology services.
              • Alternative and augmentative communication (AAC) services.
              • Community neurological care teams. [2016]
              1.5.6Tailor the frequency of the multidisciplinary team assessments to the person's symptoms and needs, with more or less frequent assessments as needed. [2016]
              1.5.7Ensure arrangements are in place to trigger an earlier multidisciplinary team assessment if there is a significant change in symptoms identified by the person, family members and/or carers (as appropriate), or healthcare professionals. [2016]
              1.5.8Tailor the multidisciplinary team assessment to the person's needs, for example, adjust the format if the person has cognitive or behaviour changes or difficulties with communication. [2016]
              1.5.9Inform all healthcare professionals and social care practitioners involved in the person's care about key decisions reached with the person and their family members and/or carers (as appropriate). [2016]
              1.5.10Ensure that all healthcare professionals and social care practitioners involved in the person's care are aware that MND symptoms may get worse quickly, and that people with MND will need repeated, ongoing assessments. Priority should be given to ensuring continuity of care and avoiding untimely case closure. [2016]
              1.5.11Consider referral to a specialist palliative care team for people with current or anticipated significant or complex needs, for example, psychological or social distress, troublesome or rapidly progressing symptoms and complex future care planning needs. [2016]


              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Ellie that's brilliant👍🏻💋
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                Comment


                  #9
                  Blimey ellie.

                  We know this now perhaps the pros need to read it because it's not happening here.

                  I don't think any of the services share. I'm not sure they know who does what.

                  I'm starting to believe in the tooth fairy and the little people.

                  🤣
                  when i can think of something profound i will update this.

                  Comment


                    #10
                    Thank you all. I know who to complain re authorities etc. I have got decent gp. I for example I emailed palliative care team re my complaint of pain for some 10 weeks. They actually recommended a nurse and physio come out. This filled me with rage as this actually happened 8 weeks ago and neither the physio or the nurse made no recommendations. Its like ground hog day .

                    My husband telephoned the team re the new mattress. They knew nothing about me.

                    I've sat here for 3hrs in total despair. I can't seem to get anyone to help. I know I need to complain but I just can't summons the effort right now.

                    I went away for Xmas break and finally felt tensions easing but I'm back home and within 2 days feel rock bottom.

                    I'm sorry all I have been so proactive and I just feel that its not there anymore. I don't feel 1 ounce of care is there x
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      shelly21 that sounds so hard. MND is hard enough to cope with without having to fight for what you need. There shouldn't be such a postcode lottery. I suppose NICE guidelines are advice for the best practice, but don't imagine you're the only place that doesn't get it. Not everyone would have shown the resilience you have up till now, do hope you can find some good support somewhere . Sending hugs xx
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                      Comment


                        #12
                        Heather R thank you. I just wish the was a sign poster. That you could email the problem and they notify the relevant department. We had them in the police especially vulnerable people. It worked well.

                        I would love to meet up with some at my health authority and speak out about mnd just so it improves things. They go on about gold standards of care but I think it boils down to no one taking responsibility.

                        I had counseling but got impossible due to my speech so that was that.

                        I lay in bed today until 11am. I never do that. I'm ex army ex police and my self discipline drives me. But I just feel dejected.

                        I'm going out for a drive with my husband later to get some flowers.

                        I hope I find my drive again soon x
                        Diagnosed May 2021 bulbar onset als.

                        Comment


                          #13
                          shelly21 I hope that you have a nice drive Shelly and it lifts your spirits xx
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            Ellie The Nice Recommendations:
                            That could be so useful to forum members who are struggling to get a seamless support service.Sad to read about the distress many people with MND feel when going around in circles trying to get advise and support.Also people buying equipment that should be assessed for and provided.
                            Thankyou
                            Mary



                            Comment


                              #15
                              shelly21 we’ve decided to go for a drive too seeing as it’s a rare bright day, leaving about 2pm xx
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                              I'm staying positive and taking each day as it comes.

                              Comment

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